Saturday, September 11, 2010

Kibbles and Bits

Okay, so this is just another in a series of "Bits and Pieces" posts, in which I provide a list of various shiny objects that have caught my attention at some point in the recent past. I just hate the conformity of having a long series of posts entitled "Bits and Pieces", so I hope you'll put up with my attempts to come up with variations on the theme. As a matter of fact, if any of you have any ideas for better titles for these kinds of posts, please feel free to leave them in the comments section.

I sure hope I don't get sued by the Kibbles ‘n Bits pet food company, as it is a copyrighted name. But just let the bastards try it, it will be a good chance to play the MS card ("Gee, I'm sorry Mr. Judge, but I have this brain disease, see, and…"). Incidentally, if you do have a dog, and you love the pooch, please don't feed it crap such as Kibbles ‘n Bits. Most commercial dog food is made of things you'd rather not know about and is largely responsible for the rise in cancer seen in household pets, which is epidemic these days. Instead, go with all-natural products, also sometimes called "human grade", such as those made by Wellness (click here) or Old Mother Hubbard (click here). When my dearly departed Stella (that’s her in the picture) was still with us (click here), we switched her from commercial dog food to the all-natural stuff on the advice of our veterinarian, and the difference in her overall health and demeanor was almost instantaneous, night and day. The food may cost a little bit more, but you'll save money on veterinarian bills in the long run…

Okay, now that I've veered completely off course, on with the show…

A big thank you to everyone who listened to my interview with Karen Gordon this past Tuesday night. If you missed it, Karen has posted an excerpt on her blog (click here). The interview lasted about one hour and 45 min., well over the originally planned one hour (mostly because there were lots of good questions, and also because I'm a blowhard). I'm happy to report that the interview received lots of very positive feedback, but when I listened to the excerpt all I heard was some guy saying "um" and "you know" an awful lot. Because, um, I guess , you know, I'm unaccustomed to public speaking and stuff.

"Musings of a Distractible Mind" is a fascinating blog written by a real-life doctor. His post "A Letter to Patients With Chronic Disease" (click here) is an incredibly honest piece of writing, and one that I think is a must read for all patients dealing with chronic illness. In the piece, Dr. Rob explains that many doctors are literally scared of the chronically ill, and goes on to tell us why. Overall, "Musings" is a captivating and valuable blog, giving patients a rare peek at what it's like to be on the other side of the stethoscope.

Here's a small way all of my Canadian friends can do a little something to help further the CCSVI cause. This pro-CCSVI online petition (click here) is directed at Canadian Minister of Health Leona Aglukkaq, who recently announced the Canadian federal government's decision to not fund treatment studies of the liberation procedure. It should take about 10 seconds to fill out the petition, so if you are Canadian, please click the above link to let the powers that be know that you don't approve of their recent actions, or, more correctly, their inactions…

One thing that is sure to make some of the staunchest CCSVI advocates' heads explode is the suggestion that some of the benefits described by patients after undergoing the Liberation Procedure may be due to the placebo effect. The truth is that the placebo effect is a very strong and poorly understood phenomenon, and one which can't be easily dismissed in any legitimate medical investigation. This article (click here) describes a trial involving Parkinson's patients, during which all of the patients involved in the trial received brain surgery. Some of the patients, though, received a sham procedure, in which they underwent the exact same extremely invasive surgery as the other test subjects, only the medication being tested was not injected into their brains. Incredibly, many of the patients who received the sham procedure experienced tremendous improvement in their symptoms, so much so that the medication being trialed was deemed ineffective, because those receiving it experienced just about the same level of benefit as those not receiving it.

Researchers are now learning that the placebo effect is not simply the function of a patient's imagination. The effect is more pronounced in procedures in which the stakes are high, and actually appears to cause the brain to release chemicals directly involved in the disease process. In other words, the placebo effect may actually have some verifiable and beneficial medical significance. Truly fascinating stuff. The article also discusses the morality involved in the use of sham procedures, and also includes some patient perspective. In the recently announced Liberation Procedure treatment trials to be conducted in Albany, New York, (click here) sham procedures will be used to test the effectiveness of the treatment.

Edited to add: based on some of the comments left by readers, it appears that some are taking this post to mean that I'm suggesting the placebo effect is responsible for all the benefits seen in patients who have undergone the Liberation Procedure. I am absolutely NOT saying this. I believe that many patients who undergo CCSVI treatment experience very real and very long lasting benefit. The placebo effect, though, must be factored in when trying to view the picture as a whole, as is evidenced by the above linked article.

Many readers have e-mailed me asking for recommendations on good books about Multiple Sclerosis. In all honesty, I really haven't read many books on the subject, instead heavily depending on the Internet to do my MS research and learning. My friend Mitch, who writes the terrific blog "Enjoying the Ride", has read quite an assortment of MS and disability related books, which he reviews in this very valuable post (click here). While you're over at "Enjoying the Ride", be sure to poke around and check out some of his other posts, as Mitch's blog is chock full of extremely interesting and well-written material.

Well, that's it for now. Oh, one more thing. I took a tumble the other night (cane slipped, wobbly legs failed me, and I fell down and went boom), and thankfully Karen was home to help me struggle back into my wheelchair. If she wasn't home, I'd have been stuck on the floor ad infinitum. So, please, if you have trouble walking, be sure to always carry a cell phone with you, just in case you find yourself kissing the hardwood (or carpet, or tile, whatever the case may be). And don't worry, I'm no worse for the wear, just some bumps and bruises.

21 comments:

I listened to you speak and can honestly state that I never heard a single um, I guess, you know. So maybe the ethers filtered them out before your voice got to me or else they were drowned out by your prevailing brilliance. :) As for Kurmudgeon, I could not get in without a password and there seemed to be nowhere to establish one. I've sent an email in but I bring it to your attention in case some of your other readers have the same experience. Or maybe I was just suffering from MS brain fog. I hope your bruises etc go away soonest. The cell phone idea is a good one.Judy

I was finally able to register. It took a bit of digging around though. There is a small registration button at the bottom of the page adn that takes you to the form. I tried to put wheelchair kamikaze and then Marc Stecker as the referrer, but it accepted neither so I left it blank. I hope that is not a reflection of your membership. I loved their disclaimer and caveats and feel I'll fit right in. If they'll have me. Thanks so much for the opportunity.

@WW- no one says that the placebo effect is a fraud but saying that it can heal the body ... that's a long stretch. i would not give my kid a sugar pill instead of penicillin for an infection! the placebo effect is real and accounted in medical research even if it is not fully understood.@briana- i should have read your comments first, i struggled too to get my registration going.

I guess you truly lived up to "kamikaze", flying through the air and eating the carpet like that. Take it easy will ya? Anyway, again job well done and great interview with the self healing coach, loved the Soliloquy too! Sox 7.5 games out? Not looking good. I think I will try that dog food. Id eat shit if it helped me. Forget the dog! Greek

Just want to say great job on the Karen Gordon interview. I listened for the entire almost two hours and the last part was really interesting - you are so knowledgeable on such a variety of subjects.

Hope you're feeling better after your fall. I fell a few weeks ago and couldn't get up - I live alone and the more I tried, the weaker I got. Cell phone wouldn't have helped as the door was locked and I was nowhere near it. I ended up laughing hysterically at the situation, then closed my eyes and took a nap. When I woke up I was rested and able to crawl over to a chair, pull myself up over the chair and "wall walk" over to my scooter. Funny and scary at the same time but I'm glad Karen was home to help you. Be careful out there!

Hi Marc, I enjoyed your radio show and thought you were very well-spoken. No one has given you any ideas in lieu of "bits and pieces," but how about "Minutiae for the Mad" or "Everyday Minutiae," or something along those lines? I signed up for Kurmudgeons Korner before I read your user name, so I just left it blank as it wouldn't take WK. I keep a walker at the ready in my house and find it's way more steady than a cane. BTW, I'm going to be getting a venoplasty in a week or two, so wish me luck!

Unfortunately, due to overwhelming demand, we've had to suspend adding new members to Kurmudgeons Korner. Everybody who has already submitted a membership request will be processed, but for now the membership quota has been filled.

When new membership opportunities arise, I'll again post info on the joining the forum. Sorry…

Marc,My understanding is that with most medical treatments, placebo effect does play some role, as it undoubtedly does with CCSVI. However, I have seen and read enough about the results of this procedure that tell me that there is more going on here than just placebo.

Here is a compelling quote from the CCSVI.org website giving evidence that results are not just related to placebo:

“Perhaps the most interesting indication that placebo alone does not account for Dr. Zamboni’s Open Label findings is that, for RRMS patients receiving treatment, only those who experienced restenosis suffered MS relapses. All patients whose treatment remained patent were relapse free throughout the 18 month trial.”

I also wonder how there can be so many varied outcomes from different people undergoing the procedure if it were just placebo that drove those results. Does it mean that a third of those undergoing CCSVI treatment are just immune to placebo? And how can placebo explain when those undergoing the procedure experience improvement at first, only to see that improvement disappear and then find out that they had re-stenosed. And finally, can placebo really improve your eyesight, give you stamina and balance back and fix bladder problems? If so, then they ought to bottle and sell the stuff…

I want to believe that this is the real deal. But if it turns out that I get benefits from a so-called placebo effect. Well, I’ll take it anyway.

Enjoyed your interview. It is really important for anyone with a balance problem to wear a lifeline necklace or braclet while alone in the house. You can even shower with it. If you fall you press a button on the device and it contacts the company - Someone answers immediately to ask about your condition and then contacts the person you designate who has a key to your home. It's very comforting to know that if you are alone and fall, help is on the way. There are many companies offering this service and the cost is minimal.

Judy-I think that you definitely must have some "um" filters installed somewhere on your computer. Thanks for the kind words, and I hope you managed to get your MSKK troubles squared away.

Briana-glad you figured out the MSKK conundrum, sorry I didn't give the referrer name when I first posted.

WW-I think the point of the article I linked to is that the medical profession is starting to grasp the fact that the placebo effect isn't just a figment of the imagination, but an actual physical reaction.

serge-placebo certainly can take place of penicillin, but it may be more effective than doing nothing at all.

Greek-I was tempted to eat the natural dog food myself. It was made out of things like free range chicken, sweet potatoes, etc. It actually smelled pretty good. Please don't mention the Red Sox, I might get nauseous…

Ms Andisue-glad you enjoyed the interview, but sorry that you two suffered a fall. Especially since you were alone. Glad you're okay, and that your sense of humor help get you through. Nothing like the ability to laugh at yourself…

Kathleen-thanks for the kind words about the interview, and for your suggestions for titles. I like the "minutia" idea. And, of course, best of luck with your venoplasty. Please keep us posted on how things go…

Ann-I didn't mean to intimate that the effects of the liberation procedure can strictly be attributed to the placebo effect. I definitely believe that the procedure results in real benefit for some patients, maybe even most patients. But, as the article I linked to illustrates, placebo can have some amazing effects. If it can reduce Parkinson tremor, I think it also could have positive effects on the MS symptoms you mentioned. The data showing that patients experience a recurrence of their symptoms upon restenosis definitely supports the idea that CCSVI is the real deal. Thanks for the post, perhaps I'll revise my original comments to reflect the fact that I don't mean to attribute liberation benefits to placebo.

Anonymous-thanks for the tip on "lifeline". My mom wears one, and it may not be such a bad idea for me to put on some potentially helpful "bling"…

I always feel inspired by the healing power of laughter. (Norman Cousins) and Hope.(Obama in 2008)

When I saw my GP last time she said she discussed CCSVI with one of my neurologists. He complained to her that we "(pwMS) were so hopeful about it".She retorted, "yeah so what? That's a good thing". She shook her head and just couldn't get how he could be so negative, and so obtuse.

And take the cell or portable phone into the bathroom when you take a shower and place it where you could reach it if you were to fall. Most household accidents are falls in the bathroom and the fact that the person could very easily lie on the floor for hours (or days if living alone!) contributes more to a bad outcome than the injury itself. Are you scared now? Good! This is one very easy and free thing you can do to take care of yourself. We have enough problems. Who wants to spend even one hour cold and wet and in pain on the bathroom floor? Not me! Glad Karen was home to help you, Marc.

You can't go wrong with an Invacare wheelchair, but there other high quality brands as well. Using the right wheelchair can have a positive impact on your loved one's quality of life, so taking the extra time to make an informed decision is definitely worth it in the long run.

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...